Author Topic: Any suggestion before I start looking for an urologist in the South of France ?  (Read 1126 times)

etcosp

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In a few weeks, I'll have another appointement with my general practitioner to consider the possibility of me seeing a specialist for my POIS.
Given that, if I refer to Quantum's thread (https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338), no urologist is known to be aware about POIS in my area, I was wondering if anyone had an advice for me to optimize my research.

Thank you for the help :)

Prospero

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I'm French. As far as I know there is no one in the south of France, and only Dr. Amarenco's service of neuro-urology in Tenon, Paris is really up with POIS (and they're not very helpful). See either Dr. Chesnel or Miget. Paris is not in your area but it's not so hard to go there once for a planned appointment. Dr. Chesnel also offered me to see Dr. Sebastien Beley, another urologist in Paris, if I wanted a second medical opinion on my POIS. I didn't make an appointment.

Other doctors, elsewhere in France, may exceptionally know POIS but probably never saw patients and have a limited knowledge of the issues. I saw a urologist in Paris who didn't have any idea POIS was a thing and told me to see a psychologist. In most cases I would say that urologists are a poor choice if you want to see a specialist for POIS, as they're mostly surgeons who spend most of their time on patients with really different problems. Neurologists would be my first choice. Even if they don't know POIS in the first place, I believe that they can be more useful. Also, most of POIS symptoms seem neurological in nature.

Whatever it be, remember that these doctors don't know what POIS is and how to cure it, and they will only say and try things based on the very lean medical literature on POIS, which you can find on this forum. So, you shouldn't expect too much of them.

Another possibility might be to look for doctors who see patients for Chronic Fatigue Syndrome. I didn't try and don't know any name, but it would probably not be a stupid initiative. The symptoms of ME/CFS are very close to POIS though less linked to a single trigger, and it's much more studied and known more widely. You may ask your GP his opinion.
« Last Edit: August 03, 2021, 10:27:16 AM by Prospero »

etcosp

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Answered in PM :)

Quantum

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I'm French. As far as I know there is no one in the south of France, and only Dr. Amarenco's service of neuro-urology in Tenon, Paris is really up with POIS (and they're not very helpful). See either Dr. Chesnel or Miget. Paris is not in your area but it's not so hard to go there once for a planned appointment. Dr. Chesnel also offered me to see Dr. Sebastien Beley, another urologist in Paris, if I wanted a second medical opinion on my POIS. I didn't make an appointment.

Other doctors, elsewhere in France, may exceptionally know POIS but probably never saw patients and have a limited knowledge of the issues. I saw a urologist in Paris who didn't have any idea POIS was a thing and told me to see a psychologist. In most cases I would say that urologists are a poor choice if you want to see a specialist for POIS, as they're mostly surgeons who spend most of their time on patients with really different problems. Neurologists would be my first choice. Even if they don't know POIS in the first place, I believe that they can be more useful. Also, most of POIS symptoms seem neurological in nature.

Whatever it be, remember that these doctors don't know what POIS is and how to cure it, and they will only say and try things based on the very lean medical literature on POIS, which you can find on this forum. So, you shouldn't expect too much of them.

Another possibility might be to look for doctors who see patients for Chronic Fatigue Syndrome. I didn't try and don't know any name, but it would probably not be a stupid initiative. The symptoms of ME/CFS are very close to POIS though less linked to a single trigger, and it's much more studied and known more widely. You may ask your GP his opinion.
Thanks for your feedback, Prospero, about your appointment(s) with Dr Amarenco's team in La Sorbonne.   You are right to say that, for now, POIS doctors do not have much to offer about the understanding or even the relief of POIS.  However, the fact that they already know about POIS is a clear advantage ( no useless tests, only test to eliminate other possible causes, no weird interpretations, no referral to the psychiatric service...).

Also, the POIS Doctors on the POIS Doctors List have some interest in POIS research, so seeing more and more POIS patients will help get our cause ahead.
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Prospero

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I agree very much with your points. A more complete feedback can be found in my personal thread:
Had my exam at Pr. Amarenco's service of neuro-urology in Paris. Finally no MRI, only tests of the autonomous nervous system, which showed that there was no anomaly (I was unfortunately not in a full Pois state, I had provoked an orgasm the day before but it was not strong and I didn't feel very sick; I guess that the result is still valid though).
The neurologist suggested that I try alpha-blockers (silodosin) for one month and prescribed me blood tests for LH, FSH and prolactine but nothing else, although I asked her for more. She also mentioned that nervous stimulation therapy could be a possibility. She recognized that, as tests thus far weren't conclusive, she couldn't tell me anything about my Pois and she declined to make hypotheses regarding the reasons why opioids and omega-3 are beneficial in my case.

(En francais, envoye a l'instant en mp a etcosp en reponse a sa question: )
Quote
Je n'ai eu que deux rdv avec le docteur Camille Chesnel de l'hopital Tenon. Lors du premier j'ai expose mon cas et elle m'a propose de revenir (plusieurs mois apres) pour des tests de mon systeme nerveux autonome. La deuxieme fois ces tests ont eu lieu et n'ont rien montre d'anormal, ce qui a conduit le docteur a me dire qu'elle ne pouvait rien me dire de plus en l'etat sur mon cas, qu'ils etaient dans l'inconnu (un petit nombre de patients POIS ont des anomalies a ces tests, la majorite non). Dans ces conditions, elle m'a donne trois tests sanguins supplementaires a realiser (LH, FSH et prolactine : les niveaux de LH et FSH etaient bas) et propose d'essayer un alpha-bloquant, la Silodosine, qui a donne de bons resultats dans une etude recente (mais apparemment plutot en empechant l'ejaculation, ce qui n'est pas vraiment une solution... je n'ai pas essaye pour le moment). Elle m'a offert de fixer un nouveau rdv dans les mois qui venaient, mais comme je savais que j'allais m'absenter pour l'ete et ne connaissais pas encore mes disponibilites cet automne, nous avons convenu que je reviendrais vers elle quand ca m'arrangeait. Mais fondamentalement, j'etais tres decu, et je n'etais pas tres convaincu que de nouveaux rdv serviraient a grand chose.